Reframing Dementia - An Irish perspective

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Reframing Dementia - An Irish perspective
Professor Eamon OShea NUI Galway
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Dementia in Ireland

• Dementia an ageing problem
• Great stigma still associated with diagnosis of
  dementia
• Financial, emotional and social costs of dementia
  are high
• Public knowledge improving, but attitudes remain
  largely negative pessimistic and nihilistic
• People with dementia are one of the most
  vulnerable and invisible groups in Irish society
  today
• The predicted change in age structure of the
  population particularly in the old old, - will
  significantly influence future dementia
  prevalence rates
• Need for clinical, economic and social discourse

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Actual and Projected Population of Older People
in Ireland by Age Group, 2006-2041 (MOF2)
(Source CSO, 2008)
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Actual number and projected growth in the number
of people with dementia in Ireland by age group,
2006-2041 (M0F2) (n)
Age groups 2006 2011 2016 2021 2026 2031 2036 2041
30-59 2,576 2,803 2,967 2,982 2,930 2,869 2,791 2,686
60-64 983 1,193 1,303 1,449 1,592 1,696 1,853 2,024
65-69 2,258 2,734 3,334 3,649 4,069 4,488 4,842 5,304
70-74 4,130 4,542 5,575 6,868 7,576 8,495 9,397 10,141
75-79 6,716 7,378 8,328 10,421 12,992 14,467 16,323 18,178
80-84 10,096 10,924 12,504 14,543 18,632 23,568 26,554 30,301
85 14,688 18,319 22,392 27,581 34,131 44,464 58,441 71,946
Total 41,447 47,893 56,404 67,493 81,922 100,047 120,201 140,580
Source CSO (2008) Population and Labour Force
Projections, 2011-2041, Stationary Office,
Dublin, Table 5, p. 42 EuroCoDe (2009) estimates
of age/gender-specific prevalence of dementia
rates.
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Main costs of dementia

• Burden of illness estimate has been produced for
  dementia in Ireland 1.9 billion
• Main cost driver of burden has been identified
  family care gt 50
• Residential care costs also high
• Primary care and community care low in comparison
• Irish burden has been analysed in comparative
  context- burden significant relative to other
  diseases

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Current Realities

• Lack of focus on prevention
• Diagnosis - poor stigma, instruments,
  resources, pathways
• Most people unaware they have disease
• Too few memory clinics
• Primary care knowledge, information, pathways
• Community care fragmented and incomplete
• General hospital care awareness, training,
  education
• Residential care focus on instrumental care -
  weak
• on personhood and quality of life
• Palliative care - poor

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Government Policy

• Stated objective of government policy for people
  with dementia is to facilitate their continued
  living at home for as long as possible and
  practicable

(The Years Ahead, 1988 Shaping a Healthier
Future, 1994 A Review of the Years Ahead, 1997
Action Plan on Dementia, 1999 A National Health
Strategy, 2001 Dementia Manifesto, 2007 HSE
Report on Dementia, 2007 National Dementia
Strategy, 2014)
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Other Countries

• Living Well with Dementia (England)
  comprehensive, address continuum of care from
  diagnosis to death, (i) public and professional
  understandings (ii) early diagnosis, (iii)
  treatment and support (iv) quality care in
  community, hospital and residential settings
  
• France ambitious making dementia a priority,
  commitment to ring-fenced resources, detailed
  implementation plan focuses on a broad range of
  areas including raising awareness of dementia
• Making the Most of the Good Days (Norway) Focus
  on 3 areas Day care, Developing and adapting
  Nursing Homes Increased knowledge and skills for
  all
• Scotland key services delivery areas Improved
  post-diagnostic information and support Improved
  care in general hospital settings, including
  alternatives to admission
• Australia/Canada Incorporate a focus on
  prevention - research, risk reduction, delaying
  onset of dementia
• European Emerging European themes origins of ND
  disease disease mechanisms and models disease
  definitions and diagnosis developing therapies,
  preventive strategies and interventions health
  care and social care

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Genio Initiative

• Developing and testing new service models within
  local communities
• Funding from AP and HSE
• Four community-based initiatives being funded,
  including South Tipperary
• Innovation in primary and community care
• Focus on people with dementia and the communities
  within which they live
• Individualised, person-centred care
• Personhood

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Current Policy Frames

• Individual
• Biological
• Residential
• Risk
• Deficits
• Exclusion

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Counter Policy Frames

• Collective
• Social
• Home
• Capabilities
• Assets
• Inclusion

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Practice Implications Collective

• Making dementia public
• Knowledge for people with dementia
• Knowledge for health professionals
• Combating ageism and prejudice
• Policy and planning
• Prioritising dementia

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Practice Implications Social

• Maintaining identity
• Enabling relationships
• Securing attachments to people and places
• Challenging communities
• Sustaining care relationships
• Replicating good practice

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Practice Implications Home

• Self and identity
• Biography and personality
• Care services
• Autonomy and empowerment
• Giving and receiving
• Funding models

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Capabilities

• Stages of the disease
• Younger people with dementia
• Relationships
• Physicality
• Personhood explained

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Assets

• Person with dementia as active citizen
• Being and doing
• Time
• Whole families and communities
• Networks, friendships, dignity, respect
• Memory and relationships

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Inclusion

• Citizenship
• Rights
• Home
• Visibility
• Acceptance
• Protection
• Resource allocation

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Conclusion

• Dementia is the most important ageing question
• Need to mobilise intellectual resources in
  support of a liberating dementia strategy
• Create awareness and understanding of dementia
  among the public
• Agree key priorities for resource allocation
• Support the practice of personhood

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The Challenge

• Do we have the vision, courage and capacity to
  imagine and initiate a new paradigm for people
  with dementia and to activate the National
  Dementia Strategy to support that new paradigm?